Tag Archives: SCA

SILVER LININGS, COOL DOCTORS AND HOPE

Silver Linings: A Short Brain Rot Update

The definition of a silver lining:
silver lining. Use the term silver lining when you want to emphasize the hopeful side of a situation that might seem gloomy on the surface. The common expression “every cloud has a silver lining” means that even the worst events or situations have some positive aspect.

Staying “hopeful” can be hard for people with a rare disease and no known treatment. For two and a half years my husband has been tested for every disease known to man kind. He is absolutely healthy. Perfect cholesterol, perfect blood pressure, low body fat, perfect weight, great heart, no Parkinson’s, No MS, No ALS, no cancer. He is the healthiest person on Earth who’s brain is shrinking. Very frustrating! FIVE neurologists have had his case. Some in Dallas and some in Denver. They all were old. OK not to insult but they were all over 60…older not OLD. They all wore white lab coats and had ZERO sense of humor. I was beginning to think Neurologists were born without personalities. Not ONE of them found my use of the term BRAIN ROT funny…until now.

I fired all 5 of them and got a new Neurologist recently in Denver. She is 40 years old. And cute. And wears cute clothes- no lab coat. And cusses. And laughs at my jokes and stole my term for Spinocerebellar Ataxia and now says “brain rot” to us. She ROCKS! She runs the Ataxia Clinic in Denver. RUNS IT! And not ONCE in our initial 3 hour meeting did she make us feel hopeless. In fact it was the exact opposite. She is all about fixing this. She made it very clear we are going to keep looking until we find out WHY and then HOW to treat it. I like her. So when she ordered a spinal tap last month to test my husband’s spinal fluid I understood why Patrick said “no”. He’s been poked and prodded and through a bajillion tests that were QUITE painful with no results. All clear. Every test he takes reveals that he’s perfectly healthy….only he’s not. So I knew he would not be gung-ho about a SPINAL TAP! SHIT…who would?

But our new Dr. Cool Lady explained some very rare disorders than can lead to Ataxia that she has come across in her research and she had a “hunch” she wanted to follow. So I of course was all “oh ya- let’s stab a needle into your spine and suck fluid out”. FUN STUFF!

So we did it. Well….he did it. I watched. I didn’t want to watch but I sort of felt like it was the least I could do. The results were shipped off to The Mayo Clinic and we were to sit and wait. Sort of used to that by now. Patrick was not the least bit optimistic- who can blame him. I sort of was. And for a “glass is half empty” kind of gal that was surprising.

And ONE MONTH LATER…the results. For the first time in well over 2 years a test came back abnormal. Do you know how weird it is to be ELATED about an abnormal test?

So I won’t go into detail but she immediately put him on a medication that has worked for one of her previous Ataxia patients. It has only been 3 days. But I am hopeful. She talks to us as if there’s no gloom and doom. As if there’s no reason to expect Patrick doesn’t have a long future ahead of him. God damn it he’s gonna have to live with me a LOOOOONG time. Poor guy. At least we think so. Who really knows how long they have. Life is short and making the most of everyday is a MUST!!

I want to thank Dr. Cool Lady for being the greatest doctor we could ask of. For being hopeful. For being positive. For looking in places no one else thought to. For going above and beyond. For making me smile. Oh- and Patrick too of course but we all know this is about me ;). Here’s to HOPE….

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A SLOW MOURNING…MOUNTAINS AND BANDAIDS

I have posted a few times on my fitness page that I have a goal to hike up Pike’s Peak this coming summer. It’s 13 miles up a twisty, turny, technical Barr Trail to the summit of the Peak at 14,114 feet. I can do it. Mentally Im good and if my knees will hold out I think I can do it. Im in “training” now working on building my endurance. I casually mentioned to my husband that I was going to hike it alone and he flipped out.

Apparently it’s “not safe”. Honestly there should be other hikers on the trail especially if its good weather. Ill file a plan, carry bear mace and not talk to strangers but he insists that some crazy mountain man might drag me away so I need a partner. So I TOLD my friend Susie this past Saturday that she’d be hiking it with me. Without flinching she said “I’d be honored”. I love her for doing this for me.

You know what sucks…as much as I love Susie I wish it were Patrick. I wish my husband could hike with me. It was never even an option. His fucking brain rot makes his balance very off and maneuvering such a technical climb is not possible for him anymore. And that sucks big fat ass. There was a time not long ago we wouldn’t have flinched. We would have already hiked that sucker by now. Patrick was a triathlete. Biking, climbing, swimming, running…many miles at a time. When someone dies suddenly and tragically you mourn so instantly. Its like a sledge hammer hits your chest and a knife stabs your heart. You scream and writhe in pain and hurt so badly so deeply and so quickly its like being struck by lightening. I feel as if brain rot must be like cancer or other long term illnesses…you mourn for so long. And its like every little thing that slips away is a new sledge hammer to the chest. Its exhausting.

It’s not quick. Its very gradual. Slowly and steadily and methodically the physical body starts to fail. And it’s day after day after day of mourning and being sad about yet another small loss. Most of the time we are fine. Some days I am pissed. Maybe today I am pissed. Pissed that instead of ripping the bandaid off quickly and efficiently so the pain is intense but hits you fast, the bandaid is so so slowly being peeled off against his will that you have to suffer through each hair it pulls on. And why the fuck did he have to have a band aid pulled off in the first place.

Tomorrow I will feel better. He won’t. I am finding strength as this disease creeps on. I am finding strength in me as a woman and mother and wife. More than I EVER thought I was capable of. It’s a necessary strength. But there’s a guilt that comes with a gaining of my own strength. For I can climb a mountain. I can run. I can speak clearly. I can do anything. And I should. I should do everything for those that cannot. I have no excuse NOT to. I know many who would never attempt to climb Pikes Peak. I mean whats the point? Why? It will never cross their minds. But they CAN. If they want to. Patrick cannot. Someone who ACTUALLY wants to cannot. So I will. And Susie will. And like no other human on Earth she knows me and why I need her to go. She has suffered great loss.

And like my friend Steph says “sometimes we step in for others when they cannot do for themselves”. I’ve had a LOT of friends step in and step up for me. I am eternally grateful. And I will push play on this stupid fucking INSANITY MAX workout that nearly kills me everyday because I CAN. Because I have no excuse not to. And I will climb that Peak this summer. For myself, for Patrick, for those who cannot.

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